Diary Day 117: UK Government Work Health and Disability Green Paper Improving Lives

https://www.gov.uk/government/consultations/work-health-and-disability-improving-lives/work-health-and-disability-green-paper-improving-lives Over the last week I was aghast at the news yet again. The UK Government’s volte face regarding their approach to sick and disabled people in the benefit system is another assault in the arsenal of attacks meted on those too unwell or disabled to work. Remember when Theresa May took over as PM […]

Diary Day 114: How To Have A Life and CFSME – A Spoonie’s Progress

It’s been a couple of months since I last blogged and that’s because I’ve been grasping the nettle of life!  It’s almost my 5 year anniversary of being diagnosed with CFSME. To some that’s a newbie, to me it represents 5 of the hardest years I’ve ever been through, period. But I’m 5 years into […]

Diary Day 107: Research Needed, MECFS Is A Spectrum Disorder, Energy Finite Though?

Yesterday I blogged about meeting a new friend for a cuppa.  While we were talking she talked about the in’s and out’s of having a child who is Autistic. Then we talked about the in’s and out’s of having CFSME. It’s the first time I’ve had to explain my experience of CFSME with someone who […]

Diary Day 106: Boundaries Abt CFSME, GET, Friendship, Learning.

This week’s been ‘one of those weeks.’  It started with a day on Monday that knocked me sideways, or should that be, laid me flat. From early in the morning as I got up to get ready to see my counsellor I could tell something was wrong, really quite different and wrong. My back and head […]

Diary Day 104: Talking About ME Symptoms, Gap in NHS Care, Grief, Cancer, Carer, What An ME Crash Feels Like Post 1

This weekend is an anniversary. It’s the anniversary of 2 years since I went into a steep decline in my functioning and symptoms that people with ME call a ‘crash.’   I went from being a moderate ME patient to a severe ME patient in the space of about a month.  In my case, the […]

Diary Day 94: Refocussing From MECFS Via Spoon Theory, Improving Quality Of Life.

Happy New Year readers! A bit late, I know, but recently I’ve been attempting something. I’ve been using Spoon Theory to try to give myself a bit more of something kind of special – a better quality of life (QOL). Before I carry on, aside for some life and health related basics measured for all, my QOL is […]

Diary Day 93: Having A Nasty Winter Cold Makes Me Look Back On Journey With MECFS

It was inevitable: it’s winter, I am running central heating for the first time in 2 years and I’ve just been through a house move, which for someone without ME would be stressful, but for someone with CFSME is doubley so. Yup, I’ve got a nasty horrible cold. My nose has been blown constantly since […]

Diary Day 91: In My New Home, Housing Benefit, Patient Group Direction Flu Jab, Telling Pharmacist What MECFS Is

….and hello December!  It’s more like the end of February down here at the moment, the sun is shining in the way it does when the season is changing from winter to Spring and you feel that warmth is coming. Maybe it’s also my good mood warming me up because I’m firmly ensconced in my […]

Tory Majority Day 78: Why I Did Graded Exercise Therapy For MECFS And What It Was Like Plus CFSME and Diabetes

At the bottom of yesterday’s post, a reader posted a comment about why I’d written:  “None of them have helped my symptoms, except Graded Exercise Therapy. GET confirmed to me that I can do a bit of exercise and described exactly how much that is before I decline. It was useful in that way.” GET can […]

Tory Majority Day 77: What Works – My Rule Of Thumb For Getting MECFS Symptoms Reigned In

I’m suffering from an increase in MECFS symptoms at the moment but if you follow my diary you’ll have read how it feels pretty much every time I post. There’s never a day that goes past where the unwelcome guest isn’t in my life, so what do I do that makes it possible to manage the symptoms […]